Ultrasound and ct scan for cirrhosis

[strangerbynight]

Does ultrasound and ct scan are reliable for detecting cirrhosis? both of scan show i have no cirrhosis, i am gonna have fibroscan in late may and i cant wait..thanks

[gnatcatcher]

In my personal experience, a regular ultrasound isn't reliable for detecting cirrhosis. I never had a CT scan, so I can't comment on that. A fibroscan is actually a special kind of ultrasound, and it is specifically meant to measure the amount of fibrosis, with levels over a certain kPa value indicating cirrhosis. Very low kPa values are labeled F0 (no fibrosis), increasing amounts of fibrosis are labeled F1, F2, F3, and cirrhosis is labeled F4.

A fibroscan isn't perfect, especially if the patient is very overweight or has close-together ribs or is tested by an inexperienced operator. (By now, most operators will have a lot of experience.) On the day of your fibroscan, to get the most accurate results, don't eat or drink for at least four hours beforehand. And if your ribs are very close together, you may be asked to curve your body like a banana to stretch the space between ribs, because if the operator pings a rib instead of your liver, your kPa score will be artificially high.

Gnatty

[Lynn K]

An ultrasound or CT can show indications and provide concurrence with cirrhosis diagnosed by other means like a liver biopsy, Fibroscan, or Fibrosure blood test.

[Mugwump]

The imaging is done also to rule out other problems that can rarely occur with HCV. One being damage to the bile duct, the other reason is because the risk of liver cancer is significantly increased with a diagnosis of HCV. So the scans are used for early detection of the problems that can occur with chronic HCV infection more than the diagnosis of cirrhosis.

Ultra sounds also do sonic readings on the quality of blood flow from the liver to the spleen, which can be an indication of cirrhosis but can also be indications of other conditions.

CT scans are not commonly done, here in Canada anyway, unless there are indication of problems, however ultra sounds are done on all HCV and liver patients as a matter of course.

[strangerbynight]

The imaging is done also to rule out other problems that can rarely occur with HCV. One being damage to the bile duct, the other reason is because the risk of liver cancer is significantly increased with a diagnosis of HCV. So the scans are used for early detection of the problems that can occur with chronic HCV infection more than the diagnosis of cirrhosis.

Ultra sounds also do sonic readings on the quality of blood flow from the liver to the spleen, which can be an indication of cirrhosis but can also be indications of other conditions.

CT scans are not commonly done, here in Canada anyway, unless there are indication of problems, however ultra sounds are done on all HCV and liver patients as a matter of course.

That was my case, i had an ultrasound done first then they found 2 lesions, one on each side of the liver lobe, so they send me for a ct scan to rule out and one was a hemangioma and the other was indeterminate and favour to prepresent as a cyst..but they did noted that i do not have cirrhosis or hypertension, sleen are normal in size so the liver thats why i was curious about how reliable the ultrasound and ct scan was, atm i have no symtoms of liver desease, i mean i feel fine and heathty..i am from canada by the way..

[Lynn K]

That is why I have ultrasounds every 6 months to monitor for early I fixation of HCC as I have liver cirrhosis so am at risk.

My ultrasound does say coarsened echotexture consistent with cirrhosis but I have a diagnosis so the ultrasound is basically agreeing with my existing diagnosis. They also use the Doppler to estimate blood flow and direction through the portal vein as well as size of spleen and liver.

I only started having symptoms a few years after I was diagnosed with cirrhosis. The only symptom I have is lower leg swelling called edema other than that if I did not already know I have liver disease I would have no clue anything is going on.

By the time you have symptoms it is very advanced cirrhosis. Throwing up blood due to bleeding varicies,  extremely swollen abdomen from ascities with the patient appearing pregnant or the development of hepatic encephalopathy HE.

Other than my mild edema I feel fine and healthy too.

In early cirrhosis there are no symptoms.

Has your doctor said you have cirrhosis or are you still in the diagnosis phase?

[dragonslayer]

Mug,  Is it the HCV which increases HCC risk, or the fibrosis that sometimes results from it??

[strangerbynight]

That is why I have ultrasounds every 6 months to monitor for early I fixation of HCC as I have liver cirrhosis so am at risk.

My ultrasound does say coarsened echotexture consistent with cirrhosis but I have a diagnosis so the ultrasound is basically agreeing with my existing diagnosis. They also use the Doppler to estimate blood flow and direction through the portal vein as well as size of spleen and liver.

I only started having symptoms a few years after I was diagnosed with cirrhosis. The only symptom I have is lower leg swelling called edema other than that if I did not already know I have liver disease I would have no clue anything is going on.

By the time you have symptoms it is very advanced cirrhosis. Throwing up blood due to bleeding varicies,  extremely swollen abdomen from ascities with the patient appearing pregnant or the development of hepatic encephalopathy HE.

Other than my mild edema I feel fine and healthy too.

In early cirrhosis there are no symptoms.

Has your doctor said you have cirrhosis or are you still in the diagnosis phase?

I am going to see my herpetologist for the first time tmr, i only seen the nurse 3 weeks ago for a pretreatment, so far i had 3 blood test, the last one was 3 weeks ago and was told that blood test to determine the genotype, viraload, ect.one ultralsound and found some lesions so they went for ct scan to rule it out, there will be a fibroscan on may 26 so i dont know if they will give me the med for the treatment tmr or what, i am a bit nervous because of the lesions things, even its been clear with ct scan, what i dont understand was on one lesion was found on my left lobe was 1.3 cm but the ct scan 3 weeks later show .7cm, and was favoured as a cyst since they not even sure what it is, but it looks like half a size of original ultrasound..i get a bit scare and i hope they dont miss anything because i read that with the DAA treatment it will rapid the tumor grow if it is a tumor at all..another word i am scare of hcc..

[Mugwump]

Mug,  Is it the HCV which increases HCC risk, or the fibrosis that sometimes results from it??

It seems that HCV infection by itself can also cause cells to become cancerous. I have know 2 individuals with HCV who developed HCC without having been diagnosed first as cirrhotic. HCV that progresses to cirrhosis is a double whammy.
 

[strangerbynight]

It seems that HCV infection by itself can also cause cells to become cancerous. I have know 2 individuals with HCV who developed HCC without having been diagnosed first as cirrhotic. HCV that progresses to cirrhosis is a double whammy.

Now i am getting uncomportable now..i thought only if you have cirrhosis to get hcc..almost everything i read in internet said so too...hmm.

[Lynn K]

Ok so you were diagnosed with cysts then? If that correct they are not liver tumors so that is not HCC. Also that the object was reduced in size is a good sign if it was HCC that would not happen.

The risk of HCC is a risk of reoccurrence for those previously diagnosed with liver cancer not so much a de novo HCC incidence that possibility has been discussed but a clear link has not been established for those who did not have HCC treated previous to treating hep c.

I am not seeing a relationship between hep c and HCC except in the context that hep c can lead to cirrhosis and thus a increase in HCC risk. Basically hepc can cause liver fibrosis and cirrhosis which is a risk for HCC.

I have this from the NIH website:

"The risk of HCC, in chronic HCV infection, is associated with fibrosis stage. In cirrhotic subjects, the annual incidence of HCC is extremely high (1-7% per year), although HCC rarely develops in livers with less fibrosis."

So basically the risk of HCC is 1-7% per year for those with cirrhosis due to hep c.

I really dont think you have cirrhosis and so are not at much risk for HCC.

Have you had a test called AFP  (alpha-fetoprotein) that test can be a liver tumor marker but it is used in conjuction with ultrasound as it is an imperfect tool for HCC diagnosis it is more of an indication of possible HCC. If you have low platelets and elevated AFP (above several hundred) I would be more concerned but so far I would not worry yet.

Good luck

[strangerbynight]

Ok so you were diagnosed with cysts then? If that correct they are not liver tumors so that is not HCC. Also that the object was reduced in size is a good sign if it was HCC that would not happen.

The risk of HCC is a risk of reoccurrence for those previously diagnosed with liver cancer not so much a de novo HCC incidence that possibility has been discussed but a clear link has not been established for those who did not have HCC treated previous to treating hep c.

I am not seeing a relationship between hep c and HCC except in the context that hep c can lead to cirrhosis and thus a increase in HCC risk. Basically hepc can cause liver fibrosis and cirrhosis which is a risk for HCC.

I have this from the NIH website:

"The risk of HCC, in chronic HCV infection, is associated with fibrosis stage. In cirrhotic subjects, the annual incidence of HCC is extremely high (1-7% per year), although HCC rarely develops in livers with less fibrosis."

So basically the risk of HCC is 1-7% per year for those with cirrhosis due to hep c.

I really dont think you have cirrhosis and so are not at much risk for HCC.

Have you had a test called AFP  (alpha-fetoprotein) that test can be a liver tumor marker but it is used in conjuction with ultrasound as it is an imperfect tool for HCC diagnosis it is more of an indication of possible HCC. If you have low platelets and elevated AFP (above several hundred) I would be more concerned but so far I would not worry yet.

Good luck

I did have an AFP test and it was register at 3 according to my nurse when i ask her last week, and about the cyst, the ct scan only states that it was indeterminate and was favoured to represent as a small cyst and yes that was the one that show 1.3 cm in an ultrasound 3 weeks before that, now it show .7cm, also the ct scan says that no morphologic features to prepresent cirrhosis which is a very good indicators, well i am seeing my hep doctor tmr morning and i will ask her all these worry question that i have, and thanks to you Lynn, always very helpful..

[Lynn K]

I knew a person who had HCC his AFP was over 500.

Before I treated my AFP was around 26.6 with normal range for my lab of 0.0 to 8.3

Now that I have treated and cured of hep c my AFP is 10.3 so still a little above normal but much improved from before treatment.

[Mugwump]

This section from a paper on SVR and cirrhosis sums up the best research to date on the mechanisms at work within the liver that can pre dispose us to developing HCC.

link to the original paper

The mechanisms by which HCV itself can cause hepatocytes to become cancerous have been exposed. But the risk level is also increased greatly by the level of early inflammation, fibrosis and cirrhosis. It is a stiff read but the facts exposed are clear.

Many tumorigenic pathways for HCV- mediated HCC have been described using in vivo and in vitro models (for review see (Tang and Grise, 2009, Shlomai et al., 2014, Lerat et al., 2011)), including direct tumorigenic/proliferative effects of HCV particles, but also indirect effects of HCV-associated inflammation, through pathways that include NF-κb signaling (Luedde and Schwabe, 2011) and reactive oxygen species (Valko et al., 2007, Seitz and Stickel, 2006). However, most of these pathways should be eliminated by virological clearance and not persist. Also, histological improvement in inflammation post-SVR has been demonstrated for most patients (see Table 1, also (Pearlman and Traub, 2011)). However, many studies have shown that HCC can still occur in a low yet persistent number of patients, even several years post-SVR. Pretreatment fibrosis stage has been identified as the major risk factor for post-SVR HCC (Yamashita et al., 2011). This implicates the fibrotic microenvironment as an important determinant of liver tumorigenesis in this subset of patients, however the mechanisms are unclear. Studies have ruled out occult HCV by qPCR in liver tissue biopsies to explain these HCCs that occur post-SVR (Maylin et al., 2008).

Several general mechanisms that are enhanced by fibrosis, could also contribute to tumorigenesis. Fibrillar collagens deposited during fibrosis stimulate integrins to form focal adhesion on the cell surface, leading to enhanced integrin signaling, cell growth and survival via the PI3K and MAPK signaling cascades (Levental et al., 2009). Additional mechanisms include increased migration (Fu et al., 2011) and anti-apoptotic signaling (Zhang et al., 2002) that promote survival of pre-cancerous cells. Additionally, increased matrix stiffness promotes cell proliferation and HSC activation, which generate important mitogenic factors (HGF, interleukin 6, Wnt), creating a positive feedback loop that is conducive to hepatocyte proliferation (Wells, 2008, Friedman, 2008). Growth factors (HGF, FGF) can also be sequestered by the extracellular matrix and signal in an autocrine or paracrine manner, thereby contributing to an increased abundance and reservoir of pro-growth stimuli in the extracellular milieu (Schuppan et al., 2001). Indeed, stromal gene expression profiles have been correlated with patient survival in HCC (Hoshida et al., 2008) (see also (Zhang and Friedman, 2012) for review).

Interesting read and very encouraging for those of us who are now SVR and have cirrhosis. It also indicates that the speculation about MAPK pathways being effected by HCV itself might have something to do with the exposing of hepatocytes to changes that can be cancerous. Like I have said before HCV messes with us in ways that are spooky as hell!! TO say the least.

I will be getting a two year PCR test done in a few weeks to rule out the remote possibility of relapse or re-infect.

Seems my doctor is finding it hard to believe that I have beat this monster, I asked him why and he said that the government is trying to establish an national re-infection frequency level post treatment and is encouraging doctors to do more HCV testing. This is also being done to discover if there are mutated strains of HCV starting to show up that evade the DAA treatments.

Cheers
Eric

[Lynn K]

I did not do a 2 year post RNA test my liver functions remain normal so good enough for me.

Only reason I was tested at one year was because I requested it.

Different doctors or countries I guess

[gnatcatcher]

I did have an AFP test and it was register at 3 according to my nurse when i ask her last week, and about the cyst, the ct scan only states that it was indeterminate and was favoured to represent as a small cyst and yes that was the one that show 1.3 cm in an ultrasound 3 weeks before that, now it show .7cm, also the ct scan says that no morphologic features to prepresent cirrhosis which is a very good indicators, well i am seeing my hep doctor tmr morning and i will ask her all these worry question that i have, and thanks to you Lynn, always very helpful..

strangerbynight, those indicators are very favorable. I'm under the impression you have received test results only by phone; if so, when you see your hep doctor, ask for printed copies of all your lab results. It makes it easier to learn to understand what each lab means (we can help). Since you're in Canada, where every province seems to have a different medical protocol, I don't know if you can get future lab results quickly on your computer, but if your hep doctor says you can, that will give you more detail than a telephoned result.

Gnatty

[dragonslayer]

It seems that HCV infection by itself can also cause cells to become cancerous. I have know 2 individuals with HCV who developed HCC without having been diagnosed first as cirrhotic. HCV that progresses to cirrhosis is a double whammy.

Im not sure that is a valid conclusion based on the anecdotal evidence you're relying on.  Do we know the fibrosis scores of the two individuals on which you are basing your conclusion?  In HCV patients with minor fibrosis or less, Im not at all convinced that is a risk factor for hcc without seeing something more definitive.

[Mugwump]

Im not sure that is a valid conclusion based on the anecdotal evidence you're relying on.  Do we know the fibrosis scores of the two individuals on which you are basing your conclusion?  In HCV patients with minor fibrosis or less, Im not at all convinced that is a risk factor for hcc without seeing something more definitive.

We cannot know the levels of fibrosis at the time they developed HCC. But the mechanisms by which HCV by itself can cause HCC have been studied. To my way of thinking the longer one is infected with HCV the greater the risk of hepatocyte dysfunction leading to cancer.

What has not been well studied yet is the difference in rates of HCC among those with cirrhosis from other forms of liver disease like alcoholism and NASH. If these statistics were put under the microscope then perhaps we could come to some conclusions as to the rates of HCC which is caused by the HCV virus regardless of fibrosis scores.

All the information available is leading to a conclusion that curing HCV long before it progresses to fibrosis at all will reduce greatly the levels of HCC. Fortunately a great many clinicians are also coming to this conclusion.

[Lynn K]

I think the majority of medical professionals have always wanted to treat hep c as early as possible before fibrosis can develop or worsen. The problem has been getting insurance companies to step up.

[strangerbynight]

I think the majority of medical professionals have always wanted to treat hep c as early as possible before fibrosis can develop or worsen. The problem has been getting insurance companies to step up.

came back from my hep doctor today and was told that i have to do a fibroscan which is on may 24 and to determine what stage of my liver, if it is stage 1 i will not qualify for the treatment, has to be stage 2 and up, canadian heath care policy i guess..now i have to wait again..but she said my liver in a good shape according to my blood test and ct scan..

[Lynn K]

I don't know about Canada but others can chime in on that but there are ways to get treatment if not allowed by your insurance.

Which blood tests have you had that leads your doctor to believe your liver is in good shape?

Liver enzyme tests for example do not indicate the extent of damage only that something is bothering your liver.

My liver enzymes were only slightly above normal before I treated. They are now in normal range but I still have liver cirrhosis.

Not saying you do have liver damage just curious on what basis what tests is your doctor making these observations with out having a Fibroscan result.

But anyway the statistics are that only about 20% of patients after 20 years of having hep c infection will go on to develop cirrhosis meaning 80% will not.

Those at higher risk are patients who are male, are overweight, and use alcohol, along with duration of infection. So with that in mind odds are good you do not have any or very little liver damage.

[strangerbynight]

I don't know about Canada but others can chime in on that but there are ways to get treatment if not allowed by your insurance.

Which blood tests have you had that leads your doctor to believe your liver is in good shape?

Liver enzyme tests for example do not indicate the extent of damage only that something is bothering your liver.

My liver enzymes were only slightly above normal before I treated. They are now in normal range but I still have liver cirrhosis.

Not saying you do have liver damage just curious on what basis what tests is your doctor making these observations with out having a Fibroscan result.

But anyway the statistics are that only about 20% of patients after 20 years of having hep c infection will go on to develop cirrhosis meaning 80% will not.

Those at higher risk are patients who are male, are overweight, and use alcohol, along with duration of infection. So with that in mind odds are good you do not have any or very little liver damage.

I guess she just assume by looking at ultrasound and ct scan along with some blood test, i belive i have this desease 36 years ago from blood and plasma transfusion in 1981...and for the treatment, because canadian health care will cover the med but only if i am in stage 2 or above, i feel like this is a long waitting batle, but almost there, i will find out in one month, but they said if the fibroscan show more damage they will fit me in for the med asap..will see about that..this started to stress me more now but i guess thats how it goes..
Btw i am a 45 years old male..

[Lynn K]

Still figure you are in good shape but you will know soon.

Well here is an odd wish but hoping you have enough liver damage to qualify and no more than that

Crazy heath insurance system

[Gaj]

While basic liver function tests don't accurately determine the level of liver damage there are a number of 'calculators' such as APRI (AST Platelet Ratio Index) which can give doctors a reasonable level of confidence in diagnosing the likelihood of cirrhosis being present in treatment naive patients. More so when the results are well to either end of the range and in combination with the patient's other results.

http://www.hepatitisc.uw.edu/page/clinical-calculators/apri

[Mugwump]

I don't know about Canada but others can chime in on that but there are ways to get treatment if not allowed by your insurance.

Which blood tests have you had that leads your doctor to believe your liver is in good shape?

Liver enzyme tests for example do not indicate the extent of damage only that something is bothering your liver.

My liver enzymes were only slightly above normal before I treated. They are now in normal range but I still have liver cirrhosis.

Not saying you do have liver damage just curious on what basis what tests is your doctor making these observations with out having a Fibroscan result.

But anyway the statistics are that only about 20% of patients after 20 years of having hep c infection will go on to develop cirrhosis meaning 80% will not.

Those at higher risk are patients who are male, are overweight, and use alcohol, along with duration of infection. So with that in mind odds are good you do not have any or very little liver damage.

Lynn it depends upon your secondary drug coverage or if like many you have no drug coverage what you have to do is agitate and embarrass the local mps by going to the news media. It seems that in BC where I live they are hell bent on creating more fibrosis cases instead of treating HCV early for those without drug insurance or the means to shell out the 80 thousand bucks for a short treatment. Sad to say but until there is a public outcry about this situation the bullshiet here in Canada will continue.

We are at a cross roads with the US drug patent polices and the costs of treating every case of HCV is why the politicians are mum on this subject. However if you make lots of noise and expose the fact that we are essentially being held ransom by US corporations there might be some changes, but don't hold your breath.

According to the entertainment industry in the US we are a nation of digital pirates, lumber dumpers according to the US forest industry corporations and now a cheat at the Nafta table according to the biggest jerks of the bunch in Washington. So if we tell Gilead to go take a hike the way India did we would most likely be invaded by Trump's myrmidons of corporate goons and lawyers.

Sad to say but things are getting that bad, now if we can just get Trump to build a wall at the 49 and pay for it things might improve and there will be work for all. As winter eases off I am sure the numbers of cheap labourers getting the hell out of the US towards Canada will increase as that jerk starts to hassle all the illegals who keep small business and farm production viable south of the 49th!

I doubt that things will change anytime soon. :-(

[Lynn K]

Sorry (Gaj) edit oops Sorry meant for Eric

He was not my first choice is all I have to say about that :/

[strangerbynight]

While basic liver function tests don't accurately determine the level of liver damage there are a number of 'calculators' such as APRI (AST Platelet Ratio Index) which can give doctors a reasonable level of confidence in diagnosing the likelihood of cirrhosis being present in treatment naive patients. More so when the results are well to either end of the range and in combination with the patient's other results.

http://www.hepatitisc.uw.edu/page/clinical-calculators/apri

Is this real? Cause i just did my calculations and its said %76 cirrhosis..thats scary..my ast is 96and the upper limit is 37 and platelet count is 157
BTW is platelet count of 157 consider low? The chart said 136-400 is a normal range

[strangerbynight]

Still figure you are in good shape but you will know soon.

Well here is an odd wish but hoping you have enough liver damage to qualify and no more than that

Crazy heath insurance system

Thanks, if my fibroscan show stage 1 i will wait for the future drugs...too much mix story about the daa...

[Gaj]

Sorry Gaj

He was not my first choice is all I have to say about that :/

?? Hi Lynne, I don't follow....do you mean whoever developed the APRI test? It is a well regarded test though not totally accurate but that would be one of the reasons strangerbynight's doctor ordered a fibroscan.

[strangerbynight]

?? Hi Lynne, I don't follow....do you mean whoever developed the APRI test? It is a well regarded test though not totally accurate but that would be one of the reasons strangerbynight's doctor ordered a fibroscan.

I believe that the fibroscan is a standard protocol now, they told me that it used to be a biopsy but now they just bought this new fibroscan machine and i was told that i am a first to be put on the test...my guess is it has to be done that way to determine if i am quality the treatment, so i assume that they cant be base on that AST and platelet calculator..thats my guess..

[Lynn K]

Hi Gaj I was replying to your commentary on the current state of United States politics which immediately proceeded my comment.

Sorry for any confusion.

[Gaj]

Hi Lynne, I don't provide commentary on US politics publicly. I suspect you may have been replying to Eric (mugwup)

[Lynn K]

Oops yeah you are right darned small phone screens I will edit the post to Eric

[Gaj]

No worries Lynne! I suppose I could give you a summary of Australian politics but I'm not sure the mods here would allow the sort of language we Aussies reserve for that on a family friendly site. 

[Gaj]

Strangerbynight,

Yes, Fibroscan is not invasive like a biopsy so glad to hear that it is available for you. Please keep in mind that the APRI is only an indicative test. AST will jump around quite a bit depending on your health and even things like recent diet and strenuous exercise The doctor would combine it with other evidence about the particular patient including previous tests, patient history and physical examination when predicting where you sit in on the fibrosis/cirrhosis scale. Then, as in your case, send you for a Fibroscan to firm up the evidence.

[gnatcatcher]

I believe that the fibroscan is a standard protocol now, they told me that it used to be a biopsy . . .

Quite true.

. . . but now they just bought this new fibroscan machine and i was told that i am a first to be put on the test . . .

That being the case, they may forget to tell you not to eat or drink anything for at least three hours before the test.

...my guess is it has to be done that way to determine if i am quality the treatment, so i assume that they cant be base on that AST and platelet calculator..thats my guess..

In the US, insurance companies require proof of fibrosis stage, and the fibroscan is fast becoming the standard form of proof.

The fibroscan experience is very much like a regular ultrasound, except that the wand gently thumps your liver. A fibroscan takes very little time, although since you are their first patient, it may take the operator some extra thumps to obtain valid ones that thump your liver instead of your ribs. Perhaps they have practiced on each other to get some experience.

Best wishes,

Gnatty

[strangerbynight]

Just had my fibroscan today and it is 6.2 kpa and was rated F0-F1 so i am not qualify
for cover of the medicine, was told i have to wait untill F2..i am going to seek for genetics drugs from india now..

[Lynn K]

Have you and your doctor appealed?

[strangerbynight]

Have you and your doctor appealed?

Today i only saw the nurse at fribroscan and was told straight up that not qualify for drugs, i am going to see my hep docotr in june 26. I will ask her whats my option going to be..

[Lynn K]

Many here have appealed and gotten treatment I would go with the Generics if I had to but first I would try to make my insurance do their job and treat me. Also it has been getting easier to get treatment with less damage than when the meds were firs approved.

Many here were treated with F0 or F1 Fibroscan scores.

[strangerbynight]

Many here have appealed and gotten treatment I would go with the Generics if I had to but first I would try to make my insurance do their job and treat me. Also it has been getting easier to get treatment with less damage than when the meds were firs approved.

Many here were treated with F0 or F1 Fibroscan scores.

Canadian heath care system policy i guess, but yeah i am going push my doctor to try to get my drugs..

[CureSeeker]

Hi everyone.

Mugwump, thanks for posting that study.  Reading it has given me possible reasons why my husband progressed to HCC and I have not.  *thumbs up*


Strangerbynight,

If you doctor can't do anything to get your treatment approved, here's link that might help you.  At the time I got treatment, my drug plan just flat out covered nothing - not even the ribavirin.  They have since started covering HCV meds, at least some of the costs - so if I ever relapse they will kick in for it a bit.  The PAN Foundation covered my treatment. 

The drug companies themselves, at least used to, have assistance available to help ease the costs.  If the doctor has determined a treatment course for you, you can check out the manufacturers website for more info on that.

I am totally dumbfounded that you have to come up F2 to get treated. 

I would be the first to tell you that I'm not the brightest star on the horizon, but it seems to me the better shape your liver is in the better your chances for success in treatment, as well as hedging the odds of not progressing to HCC.

Anyone have any theories on why that might be? 

Nevermind, it's probably budget related, and a matter of greatest need for swift action.

Wait!  It's seems you may not have that long to wait afterall.  Just be good to your liver for a little while.

https://www.theglobeandmail.com/news/national/deal-reduces-price-of-life-saving-hepatitis-c-drugs-for-canadians/article34107225/

"Shortly after the pCPA confirmed the deal, the British Columbia government declared that its PharmaCare program would begin covering the drugs for patients with chronic hepatitis C, regardless of the type or severity, beginning in 2018."

[strangerbynight]

Hi everyone.

Mugwump, thanks for posting that study.  Reading it has given me possible reasons why my husband progressed to HCC and I have not.  *thumbs up*


Strangerbynight,

If you doctor can't do anything to get your treatment approved, here's link that might help you.  At the time I got treatment, my drug plan just flat out covered nothing - not even the ribavirin.  They have since started covering HCV meds, at least some of the costs - so if I ever relapse they will kick in for it a bit.  The PAN Foundation covered my treatment. 

The drug companies themselves, at least used to, have assistance available to help ease the costs.  If the doctor has determined a treatment course for you, you can check out the manufacturers website for more info on that.

I am totally dumbfounded that you have to come up F2 to get treated. 

I would be the first to tell you that I'm not the brightest star on the horizon, but it seems to me the better shape your liver is in the better your chances for success in treatment, as well as hedging the odds of not progressing to HCC.

Anyone have any theories on why that might be? 

Nevermind, it's probably budget related, and a matter of greatest need for swift action.

Wait!  It's seems you may not have that long to wait afterall.  Just be good to your liver for a little while.

https://www.theglobeandmail.com/news/national/deal-reduces-price-of-life-saving-hepatitis-c-drugs-for-canadians/article34107225/

"Shortly after the pCPA confirmed the deal, the British Columbia government declared that its PharmaCare program would begin covering the drugs for patients with chronic hepatitis C, regardless of the type or severity, beginning in 2018."

Thanks for the link, its only show that B.C and Ontario will treat all chronics patients, wonder what the rest Canadian provinces will do, will they follow and make a change in time before my liver gets more damage, atm i am praying that my doctor can get me the meds from compassionate support group, anyways i was told that i will find out sometimes this week or next week..

[Lynn K]

As far as further liver damage it takes about 20 years of infection for about 20% of patients to develop liver damage meaning 80% will not in that same 20 years.

I was probably infected for 30 years when I was diagnosed with cirrhosis. I learned I had hep c after I had been infected for 12 years and was followed closely by my gastroenterologist with annual blood testing and liver biopsy every 5 years.

I did progress but most do not and even so it took 30 years to progress to cirrhosis.

You have time on your side...

Good luck

[andrew j]

Hi Stranger,

I agree with you that treatment is the way to go.
... You want to treat - and if, as you say, you've been infected for 36 years - its definitely the way to go.

Keep chipping away at it.
You'll get there.

Best wishes,
A.

[strangerbynight]

So i got a call yesterday from Zapatier compassionate group, they said they will cover all of my treatment also pay for my dedutible too, i cant thanks them enough for this, god bless them, also imy doctor, shes  the best, she applied me this drugs, looks like i will on my treatment soon, thanks to everyone here for the support and help he understood about this disease, i will post any update here..

[gnatcatcher]

strangerbynight, that's terrific news! I'm glad you are making progress on your way to a life free of hep C.

Gnatty

[strangerbynight]

Thanks, now one part i kind of confused, they told me that my nirse have to fill out some kind of phamacare disclose form, something jas to do with deductible, havent heard from my nurse yet so i dont know if this is a 100% things..keep my finger cross now

[strangerbynight]

Nevermind, my bubble has busted, some error and misunderstanding at their office, now waitting for a head office to response..feeling sad now

[KimInTheForest]

Nevermind, my bubble has busted, some error and misunderstanding at their office, now waitting for a head office to response..feeling sad now

I hope it works out for you, StrangerbyNight, and that you can get set up for treatment. I am in BC, and even though my fibroscan score was Stage 2-3 in 2015, I was denied treatment at that time with the new drugs because I had to first try and fail at Interferon, which I have always refused to do. So I ended up getting treated and cured in 2015 via a clinical trial, which is another way to go. There were a lot of clinical trials then for Hep C drugs, and probably still are. Otherwise, if you are in a province that absolutely refuses to treat fibrosis Stage 0-1, and if you have exhausted all options with compassionate access, and if you have gone to the press and your MP and exhausted those options of embarrassing the health care system into funding your treatment, what I would do is purchase the generic treatment via the FixHepC website, which is running the worldwide Redemption eTrials as way to get legitimate generic Hep C drugs to people anywhere in the world. Literally shipped to your doorstep. I decided quite a while ago that if I had not found my clinical trial, I would have gone that route (fixhepc.com) and purchased Epclusa. Cost is about $1500 USD for 12 weeks treatment with various DAAs available via that clinical trial.

Good luck,
kim

[strangerbynight]

I hope it works out for you, StrangerbyNight, and that you can get set up for treatment. I am in BC, and even though my fibroscan score was Stage 2-3 in 2015, I was denied treatment at that time with the new drugs because I had to first try and fail at Interferon, which I have always refused to do. So I ended up getting treated and cured in 2015 via a clinical trial, which is another way to go. There were a lot of clinical trials then for Hep C drugs, and probably still are. Otherwise, if you are in a province that absolutely refuses to treat fibrosis Stage 0-1, and if you have exhausted all options with compassionate access, and if you have gone to the press and your MP and exhausted those options of embarrassing the health care system into funding your treatment, what I would do is purchase the generic treatment via the FixHepC website, which is running the worldwide Redemption eTrials as way to get legitimate generic Hep C drugs to people anywhere in the world. Literally shipped to your doorstep. I decided quite a while ago that if I had not found my clinical trial, I would have gone that route (fixhepc.com) and purchased Epclusa. Cost is about $1500 USD for 12 weeks treatment with various DAAs available via that clinical trial.

Good luck,
kim

Thanks, i did want to go for generics and also i have talked to James Freeman (fixhepc) but my doctor want me to try this first, she doesnt seems to support me with generics cause i did ask her to monitor me if i go for generic..will wait few weeks and see

[strangerbynight]

Thanks, i did want to go for generics and also i have talked to James Freeman (fixhepc) but my doctor want me to try this first, she doesnt seems to support me with generics cause i did ask her to monitor me if i go for generic..will wait few weeks and see

So ok i got a call again today and i am officially denied for the compassionate drugs (Zepatier) my doctor doesnt want to monitor me with generics either, i am on my own now..thanks to canadian heathcare systems, this is crazy, they dont want to treat me, now i can buy my own generics drugs and they dont even want to help me..

[KimInTheForest]

So ok i got a call again today and i am officially denied for the compassionate drugs (Zepatier) my doctor doesnt want to monitor me with generics either, i am on my own now..thanks to canadian heathcare systems, this is crazy, they dont want to treat me, now i can buy my own generics drugs and they dont even want to help me..

If going the generic route via the Redemption eTrials on the FixHepC site from Australia/Tasmania is your only route left to you, if it were me I would doctor-shop until I found a doctor (could even be a GP) who would agree to monitor me, order the labs, etc. I would do this doctor-shopping armed with documents showing the legitimacy of this worldwide clinical trial of generics that is listed on clinicaltrials.gov and that has presented some of its finding to date at international liver conferences, so your doctor can see it's legit and not some dubious back-alley operation. I think you can make this happen, but it will take more work on your part. As patients, we shouldn't have to do this. But when the cure is out there and health system won't give you access, gotta find another way to it.

kim

[strangerbynight]

Thanks for the tips, as far as i know and was told by my nurse too is that only liver doctor can order viral or virus test of hep c..but your idea is brilliant and i am going to try to gather as much as i can and will show my doctor to convincing her..

[KimInTheForest]

Thanks for the tips, as far as i know and was told by my nurse too is that only liver doctor can order viral or virus test of hep c..but your idea is brilliant and i am going to try to gather as much as i can and will show my doctor to convincing her..

That's an interesting question - whether only liver specialist can order viral load test & genotype test for Hep C. I would not take that assertion at face value. I know when I was first diagnosed in 1995, it was my GP here in BC who ordered PCR confirming genotype and viral load. And he ordered all of my liver function tests for quite a while. But maybe rules have changed over the years as health care budget has tightened its belt so that only specialist can order these things now. But maybe not... Worth investigating that. I know that I have to pay for a vitamin D test in BC ($60) if my GP orders it, but I don't have to pay if any specialist orders it.

good luck!
kim

[strangerbynight]

That's an interesting question - whether only liver specialist can order viral load test & genotype test for Hep C. I would not take that assertion at face value. I know when I was first diagnosed in 1995, it was my GP here in BC who ordered PCR confirming genotype and viral load. And he ordered all of my liver function tests for quite a while. But maybe rules have changed over the years as health care budget has tightened its belt so that only specialist can order these things now. But maybe not... Worth investigating that. I know that I have to pay for a vitamin D test in BC ($60) if my GP orders it, but I don't have to pay if any specialist orders it.

kim

2 doctors told me and so my nurse who work at the liver specialist too, maybe it has changed now, so what would you recommend me? Should i go generics without doctor monitor? Is that too much risk?
good luck!

[KimInTheForest]

2 doctors told me and so my nurse who work at the liver specialist too, maybe it has changed now, so what would you recommend me? Should i go generics without doctor monitor? Is that too much risk?
good luck!

I am pretty sure the redemption eTrials require you to have a local doctor monitoring you before they will enroll you and send you the drugs. I could be wrong. But I thought it was set up that way. Otherwise they can't collect uniform data, and it isn't much of a trial. There would be no reportable results. I don't think they will just ship you the drugs if you send them a cheque. I think you need a local doctor who is on board and will order various blood tests and specified intervals.

I think you should try really hard to get your current liver doctor on board by showing her printed-out literature about this trial and the liver specialist in Tanzania who is running it. And if she absolutely won't help you, then that's when I would doctor-shop.

I wouldn't want to do the drugs without any monitoring at all - even if I could find them from some other source that didn't require me to have a doctor monitoring me. But I am pretty sure that even right in my own small town of Nanaimo (pop: 80,000), I could find a doctor who would agree to monitor me. So I guess I don't see that as much of a problem.

kim

[Gaj]

Hi strangerbynight,

The Redemption eTrials do request that patients are monitored by a doctor, often a GP/PCP, to monitor their health and also to provide data for the trial. For those with low levels of fibrosis like yourself this usually consists of viral load testing pretreatment (which you may already have?), then at 4 weeks, EOT, SVR4 and SVR12.
I'm not sure of the exact situation re testing in BC but suspect that as Kim says, it is available if you are prepared to self fund. I am aware of a number of Canadian patients who have accessed generic medications through Redemption so the FixHepC people may be able to provide some guidance or leads regarding how best to access testing in your area.


(disclaimer: I have sourced meds from FHC, I also act as a (voluntary) moderator on their patient forum but have no financial ties to them)

[strangerbynight]

I think at this point i am going to take my chances and get generics, i cant sit here andwait for the system to kick in who knows when and by then my liver might be more damage and more problems..i will try one last time to convince my hep doctor again but i doubt that she will favor it, i got the impressions last visit when i asked her. My last hope. Thanks folks for giving me some guidance..

[KimInTheForest]

Good luck strangerbynight! Let us know how it goes.

kim

[strangerbynight]

Good luck strangerbynight! Let us know how it goes.

kim

For sure Kim, btw i read your story and its amazing.

[KimInTheForest]

For sure Kim, btw i read your story and its amazing.

Thanks!

[strangerbynight]

So i just place an order of generics harvothanksm Greg Jeffery's and i should get it in 10 to 14 days from now, feeling happy, scare, aniety because i am on my own without doctor monitor..please wish me luck..thanks

[KimInTheForest]

So i just place an order of generics harvothanksm Greg Jeffery's and i should get it in 10 to 14 days from now, feeling happy, scare, aniety because i am on my own without doctor monitor..please wish me luck..thanks

Wow! Great! Good luck! Greg Jeffrey's is a really solid and legit person. Was one of the first to go get generic treatment for himself, and he really knows the generic pipeline well. So you know you're getting the real thing. At very least have a GP doctor monitor your liver enzymes, bilirubin and CBC (Complete Blood Count). A GP can requisiton those tests no problem. For most of us, it was really exciting to see our liver enzymes finally drop into the normal range after decades of being 2 and 3 times above normal. And that happens very quickly on Harvoni. So that's one indication that it's working.

Keep us all posted. And good for you for taking the initiative.

kim

[strangerbynight]

Yeah, Greg Jeffery's is an awsome guy, i have been following on the facebook group and saw he have helped alot of people, i really like his work and that he put out his time and help so many people, i am seeing my GP tmr and i will explain to him my situation and hope he will at least monitor some basics, i think he will understand and help me because hes a great doctor, will keep posted..

[strangerbynight]

Good news for me today, just came back from my family doctor and i told him my situation and he told me he will monitor me also send me for a blood test before i start the meds and will test again in 4 weeks..i am very happy, the only drawback is he cant order a viraload test, just a normal LF test but he said he will write me a note later on and bring to my heptologist dr so they can get me viraload test, i just have to wait for my meds from Greg Jefferys and it should be here in 2 weeks..excited already.

[gnatcatcher]

very glad you have found a workaround. Yes, it's exciting!

[strangerbynight]

My generics harvoni just came today, i will start taking it tmr, very excited to get cured, thanks everyone in this forums for all the support..will keep updated